Family Stories with Fingerprintless Genetic Heritage“無指紋”基因遺傳家族的故事

施佳能

Apu， who is 22 years old， lives with his family in a village in the northern district of Rajshahi1. He is currently working as a medical assistant. Meanwhile， his father and grandfather are farmers.

All the men in his family seem to have very rare genetic mutations2， thought to be experienced by only a small number of families around the world， that is， they don’t have fingerprints.

When his grandfather was young， not having fingerprints was not a big problem.

But in today’s modern era， the tiny grooves3 that rotate around the tip of a human finger in general， known as dermatoglyphs4， have become the world’s most widely collected biometric5 data. We use it for everything from things to do at airports to voting in elections and unlocking our smartphones.

In 2008， when Apu was a child， Bangladesh introduced a national identity card for adults with a database that required a thumbprint. The confused officers didn’t know how to process the identity card for Apu’s father， Amal Sarker. Finally， he received a card with the stamp “WITHOUT FINGERPRINT”.

In 2010， fingerprints became a mandatory requirement for passports and driving licenses （SIM6）. After several tries， Amal was able to get a passport by showing a certificate from the health agency. He never used it， partly because he was afraid he might have trouble at the airport.

And although riding a motorbike was essential for farming work， he never had a driver’s license. “I’ve paid the fee， passed the exam， but they didn’t issue a permit because I couldn’t provide fingerprints，” he said.

In 2016， the government of Bangladesh made fingerprint matching with a national database mandatory for those who wish to get a SIM7 card for their cell phone.

“They looked confused when I came to buy a SIM （card）， their software crashes every time I put my finger on the sensor，” said Apu with a wry smile. Apu’s desire to get a SIM card was rejected， and all male members in his family now use a SIM card issued in his mother’s name.

The rare condition experienced by the Sarker family is called Adermatoglyphia8. It first became widely known in 2007 when Peter Itin， a dermatologist9 in Switzerland， was contacted by a woman who was having trouble entering the US.

Her face matched the photo in her passport， but the customs officer could not record any fingerprints， because she did not have one. After examination， Professor Itin found that the woman and 8 members of her family had unique conditions， namely flat finger surfaces and reduced number of sweat glands10 on the hands.

Working with another dermatologist， Eli Sprecher， and graduate student Janna Nousbeck， Professor Itin looked at DNA from 16 family members. Nine of them had no fingerprints.

In 2011， the team found one gene， SMARCAD1， that was mutated in the 9 family members without fingerprints. They identified it as the cause of the rare disease. Almost nothing was known about the gene at the time. The mutations do not appear to cause any ill health effects， apart from the effects on the hands.

Once discovered， the disease was called Adermatoglyphia， but Prof. Itin dubbed11 it an “immigration delay disease”， after his first patient had difficulty getting to the US.

For the Sarker family， who is suffering from this rare condition， the community seems to be becoming more hostile12 rather than accommodating13 to their condition. Amal Sarker lived most of his life without too much trouble， he said， but he felt sorry for his children. “This is not my hand， this is something I inherited，” he said.

Recently Amal and Apu got a new type of identity card issued by the Bangladeshi government after they presented a medical certificate. The card also uses biometric data， retina14 and facial scans.

However， they still can’t buy a SIM card or get a SIM， whereas the process of getting a passport is a long and tedious15 process. “I am tired of explaining the situation again and again. I asked many people for advice， but none of them could give me a definite answer，” said Apu.

“Someone advised me to go to court. If all options fail， that’s probably what I will do.” Apu hopes he can get a passport， he said. He wants to travel outside Bangladesh. He just needs to start submitting the application.

22歲的阿普與家人住在拉杰沙希市北區(qū)的一個村莊里。他目前是一名醫(yī)務(wù)助理，他的父親和祖父則是農(nóng)民。

他的家族中，所有男性似乎都有非常罕見的基因突變，世界上僅有少數(shù)家族被認(rèn)為患有這種基因突變——天生沒有指紋。

阿普的祖父年輕那會兒，沒有指紋沒什么大不了。

然而在當(dāng)今這個時代，人類指尖通常呈螺旋狀的小小紋路——被稱為“皮紋”——已然成為世界上采集范圍最廣的生物特征數(shù)據(jù)。從機(jī)場通關(guān)到選舉投票和解鎖智能手機(jī)，事事都要用上指紋。

2008年，當(dāng)時阿普還是個孩子，孟加拉國開始推行成人國民身份證，其數(shù)據(jù)庫要求采集拇指指紋。面對阿普的父親阿邁勒·薩卡爾，工作人員很為難，不知該如何為其辦理身份證。最終，他拿到了一張加蓋“無指紋人士”印章的身份證。

2010年，申領(lǐng)護(hù)照和駕照必須提供指紋。幾經(jīng)嘗試，阿邁勒通過出示健康機(jī)構(gòu)出具的證明才領(lǐng)到護(hù)照。但他從沒用過護(hù)照，部分原因是他怕在機(jī)場還會遇到麻煩。

雖說騎摩托車在干農(nóng)活的時候必不可少，但他的駕照一直沒辦下來?！拔医涣隋X，通過了考試，但他們沒給我發(fā)證，就因為我提供不了指紋?！彼f。

2016年，孟加拉國政府規(guī)定，購買手機(jī)卡的用戶必須在國家數(shù)據(jù)庫中進(jìn)行指紋匹配。

“我去買手機(jī)卡的時候，他們看起來很為難，每次我把手指放在傳感器上，軟件就崩潰。”阿普苦笑著說。阿普一直無法如愿買到手機(jī)卡。家族中所有男性成員目前使用的手機(jī)卡都登記在阿普母親的名下。

薩卡爾家族所患的這種罕見病癥被稱為“皮紋病”。這種病是從2007年開始廣為人知的。當(dāng)時，一名女子在入境美國時遇到麻煩，便聯(lián)系到了瑞士皮膚病專家彼得·伊京。

她的臉與護(hù)照上的照片對得上，但海關(guān)人員無法采集到任何指紋，因為她根本沒有指紋。經(jīng)過檢查，伊京教授發(fā)現(xiàn)該女子與其家族中8名成員身上均有某些獨特的癥狀，即手指表面平滑，手部汗腺較少。

伊京教授與另一位皮膚病專家葉利·斯普雷徹以及研究生揚娜·諾斯貝克合作，仔細(xì)研究了該女子所在家族16名成員的DNA，其中9人沒有指紋。

2011年，研究小組在沒有指紋的9名家族成員身上發(fā)現(xiàn)了一種產(chǎn)生突變的基因SMARCAD1。他們認(rèn)定，它就是造成這種罕見病癥的原因。當(dāng)時，人們對這種基因幾乎一無所知。這種基因突變除了對手部有影響外，似乎對健康沒有任何不良影響。

這種病癥一經(jīng)發(fā)現(xiàn)便被命名為“皮紋病”，而伊京教授將其戲稱為“入境延誤癥”，因為他的首例患者是在入境美國時遇上麻煩才被發(fā)現(xiàn)的。

對于患有這一罕見病癥的薩卡爾家族，社會似乎越來越不待見他們，而不是給他們行方便。阿邁勒·薩卡爾說，他大半輩子都沒因這病遇上過什么大麻煩，可他對孩子們卻感到愧疚?！斑@雙手不是我能決定的，是遺傳來的?！彼f。

前不久，阿邁勒和阿普在遞交了醫(yī)學(xué)證明后，拿到了孟加拉國政府頒發(fā)的一種新型身份證。這種身份證也使用生物特征數(shù)據(jù)——視網(wǎng)膜和面部掃描圖。

然而，他們?nèi)匀毁I不到SIM卡，也領(lǐng)不到駕照，而申領(lǐng)護(hù)照的手續(xù)既費時又煩瑣。“我厭煩了一遍又一遍地解釋我的情況。我咨詢過很多人，但誰也給不了明確的答復(fù)?！卑⑵照f。

“有人建議我上法院。要是所有辦法都行不通，我很可能就會上法院?！卑⑵照f他希望能領(lǐng)到護(hù)照。他想出國旅行。他要做的就是開始提交護(hù)照申請。

（譯者為“《英語世界》杯”翻譯大賽獲獎?wù)撸?/p>